Why “Bad Days” Are Normal

I mentioned, in my first post, that I’ve attended a number of VISIONS conferences. And yesterday, like most of my experiences in years past, was a roller coaster of emotions. There was the usual anxiety of just maneuvering around and through crowds, the exasperation from not being able to see the faces of the people I was talking to, much laughter and even a few tears.
The tears came while listening to FFB chairman and co-founder Gordon Gund and Paul Karos, the keynote speaker, speak during the opening luncheon. Both men are inspirational and will continue to serve as role models and motivators during those “bad days” we all have.

Speaking of “bad days,” I attended a session entitled “Growing Through Grief: Emotional Adjustment to Vision Loss,” conducted by Ellen Morrow, of Vision Loss Resources. I don’t know about you, but whenever I attend a session covering this type of topic, I have this crazy notion that a “magic bullet” will be shot through the room, providing that long-sought-after solution to the emotional challenges all of us face.

As I left the session, however, I didn’t feel that shot had been fired. Instead, the session – which included stories shared by those in attendance – helped to reinforce that the “bad days” are very normal. It’s how we elect to handle them which helps shape who we are and what we will become.

As an example, I have something to share. Since beginning to lose my vision in my teens, I’ve gone through many stages of loss, dropping-off points, if you will, that remind me I have retinitis pigmentosa, and must continually deal with it. Up until about a couple months ago, I had some central vision left, through which, if you were close enough, I could make out your facial features.

Well, that vision has left me. I see shapes in front of me, so I may know you’re there. But if you aren’t speaking, I don’t know whether you’re a man or woman, and what distinguishes you – size of nose, eye color, smile – from others. I can no longer, in fact, see the faces of my wife and daughters when we sit down for dinner.

That realization, I admit, had me down for quite a while. But then I reached out to others who’d gone through similar experiences. These are people who grieved as well, then accepted the new stage, and moved on. Many work for and/or are members of the Foundation.

Which is why this year’s experience is so different from others. I hear familiar voices out there; but I don’t see their faces. But being in their company provides comfort and reassurance – in no small part because I know we’re all focused on helping the Foundation raise money for treatments and cures.

Along these lines, there were no major “incidents” yesterday while walking many corridors and going up and down escalators and elevators. The only exception was when I got in the elevator once after leaving my hotel room for the conference area and hit the wrong button. Instead of finding the “L” button for Lobby, I found the button that summoned the front desk!

I knew I was in trouble when, after I pushed the button, no light turned on but, rather, I heard the sound of a telephone ringing and then the voice of someone saying, “Front desk, may I help you?” My response was something like, “I’m sorry, just another one of your visually challenged guests trying to ride the elevator alone.”

I HATE it when the elevator door opens to take me somewhere, and there is no one else on board. That dreadful silence means that I am on my own to my destination and, who knows, another chat with the front desk!?

Regular Contributors

Dr. Steve Rose

Steve is highly respected for his expertise and tireless commitment to finding treatments and cures for vision-robbing retinal diseases. Read More...

Ben Shaberman

As the Foundation's Director, Science Communica- tions, Ben writes science and research articles for the Foundation’s website, newsletters and Eye on the Cure blog. Read More...

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